ALS Advocacy

Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, April 25, 2012

Time To End The "No Harm No Foul" Mentality

People with ALS often report a long and wasteful road to getting a correct diagnosis. They are subjected to countless irrelevant therapies and surgeries before a neurologist says, "You have ALS."

Perhaps physicians operate under a kind of no-harm-no-foul attitude. There isn't much that they can do for a person with ALS, so maybe the delay in diagnosis isn't as troubling to them as a delay in a cancer or a diabetes diagnosis.

Wrong, Doctor.

ALS clinical trials are often limited to patients within 24 months of onset. That's not diagnosis, that's onset of the disease. A patient often wastes over half of that window not knowing that the fasciculations and weakness and choking are ALS. That late diagnosis is followed by the period of shock and then the period of searching for something (like a clinical trial) that might hold some promise. Good luck finding the right trial and being accepted with the remaining window.

It's time to make sure that physicians realize that missing a prompt and accurate diagnosis of someone with ALS does a great deal of harm.